Watch Your Step: Walk by Faith, Not by Sight

I love object lessons, don’t you? I find myself far more likely to grasp and remember a concept if I have a relatable, first-hand example to drive the point home (I especially appreciate the example in food form). ;)

Today God supplied me with one-such object lesson (sans food). I had a humbling experience that made me reflect on 2 Corinthians 5:7. It’s a pretty common scripture – it graces postcards, mock eye charts and decorative signs – ‘For we walk by faith, not by sight’.

Whenever I glimpse this verse I chuckle at the irony of how it could so easily be my life verse. Since I lost my vision I take a lot on faith. For instance, I trust that the white creamy substance located near the meat course is gravy. Imagine my surprise to discover not everyone arranges a table the way I expect and my entrée is swimming in tapioca pudding.

Today I made a less messy, but equally surprising, humbling and impactful misstep, literally. A curb rose up to greet me and left me with a wrenched left side as a parting gift. I had no one to blame, but in my embarrassment and pain I wanted to cast blame anywhere but with its rightful owner… me.

When I first lost my vision I went out of my way to appear normal, in fact, I took pride in keeping others in the dark as to my limitations. Through the years, friends and family have challenged me to be more honest and forthright with others about my low vision and to not be too proud to ask for help. Case in point… in the first years of adjusting to difficulty with facial recognition I had some of the most generic conversations as I pondered who I knew well enough to receive hugs from when returning to my hometown. I’d smile and nod, but all the while I’d wrack my brain to figure out who I was talking with. If only I’d had the grace to put aside my embarrassment and pride and just ask who was hugging me I’d have had a much more edifying conversation beyond – “lovely weather we’re having.”

Navigating unfamiliar territory with blinders and a foggy windshield (figuratively speaking) requires a good guide. I am blessed to have several friends and family willing to be my seeing-eye guide, but even so (and without casting any disparagement upon their helpfulness) I’ve been hit by speeding moped, trampled countless wet floor signs, gotten lost in my own neighborhood, am perpetually disoriented in department stores and most recently, taken a tumble up a curb.

Whom I choose to follow, impacts my well-being. And when I choose to rush ahead or lag behind my guide or go my own way to cloak my weakness I come to no good.

The spiritual parallel of this hard truth isn’t lost on me tonight. Our humility and willingness to seek guidance is every bit as important as whom we look to for guidance. I can choose to rely on myself or get swept up in the world’s trends and rhetoric, but without Christ’s faithful, trustworthy & timely guidance, sooner or later I’ll have another curbside close-encounter.

How many times have I run ahead or lagged behind when I felt God’s prompting? Or worse yet, forged my own path to prove my self-sufficiency? And each time, when my plans go awry I shift the blame elsewhere or question where God was – why He didn’t save me from the chaos and hurt of my own making. It’s every bit as pitiful as grasping for a stand bar on the Underground and grabbing a fistful of a sweaty man’s chest!

Proverbs 16:18  First pride, then the crash—     the bigger the ego, the harder the fall.

The takeaway from today’s spill? I may need to swallow my bruised ego and start sporting a new accessory – white cane training here I come?!?! But more important taking practical steps to guard against a bruised ego or backside I’ve been reminded that Christ is always a safe guide! I think Corrie ten Boom sums it up beautifully, “Never be afraid to trust an unknown future to a known God.”

Its Good, It's Complicated, It's Covered by Christ

Hello All!

I’ve been woefully remiss in posting an update, or as my sister might say, I’ve been “an unfaithful tomato”. Whatever the vernacular, it’s past time I share my news with you – as I know and understand it.

I’ve held off sharing it in a widespread fashion for a few reasons, some of which, likely only make sense to me. I’ve had two major doctor appointments – one with my Oncologist and the other with my Transplant Nephrologist in the last few weeks. I’ve had several other appointments, tests and diagnostics, but these two appointments have been the most enlightening. And as incoming results illuminates some answers, new questions threaten to obscure my clarity. I’ve needed time to sort through everything I’ve been told and try to make sense of it all. The diagnosis of PTLD (Post-Transplant Lymphoproliferative Disorder) has me sometimes befuddled, often confused, occasionally anxious and most recently frustrated. But I’m an equal opportunist and like variety, so sometimes I switch things up and throw in a combo platter of perplexed and bewildered with a smattering of totally-over-it into the emotions mix. Yep – my mind is a beautiful tangle at times.

I have good news.  No, scratch that. I have great news - as one of my Sunday school  kids aptly pointed out during our praise and prayer share time recently (leave it to a tween to put me in my place).

I want to stop right there. I want to revel in the glow of God’s goodness, blessings, rainbows and lollipops. But therein lies the rub…. I hate being offered the choice – “do you want the good news or bad news first”. It’s like Sophie’s choice – rip the bad news band aid off first and be unable to focus on the good stuff or have the good news overshadowed with the cloud of impending bad news hanging over you. Rain, meet parade. Good hair day, meet unruly frizz. I wanna let the good stuff shine – let it sink in – savor it. So what’s a person to do when they have both the rain and parade, the hair-do and the hair-don’t?  You see my dilemma (or at least – a glimpse into the tangle which is my thoughts).

 I have stellar news, and I have less-than-stellar news (I refuse to call it bad). And, on the occasions I’ve shared it with others I’ve elicited gleeful squeals and confused stares and one of the last times I shared it – I was questioned if I was victim of a misdiagnosis or privy to a miracle.

Well folks… it’s the latter. I’ve received word that I am cancer free! (Cue gleeful squeals….. and confused stares).

To God be the glory! I am humbled, awed and ever-so-grateful that I am on the receiving end of this gift of healing – as well as the gift of your prayers on my behalf! All praise and honor goes to the Lord Jesus Christ – Great Physician Extraordinaire! But my thanks goes out to all of my support team as well – my family, friends, and strangers – those of you who have faithfully brought my infirmities before our Father. Thank you! Your prayers and Christ’s reply have blessed me beyond anything I deserve!

I met with my Oncologist to review the results of my most recent biopsies. The pathology shows that the previous colonization of lymphoma cells are no longer active, having been replaced with Lymphoid Hyperplasia. When I said I get a lot of confused stares in response to my news I wasn’t trying to insult anyone’s intelligence, it’s just that… I can relate. As I faced my doctor’s impassive features, I was giving my best clueless impression. I’m sure my blank expression would have made me a shoo-in for a leading role in a Clueless + Dumb & Dumber spinoff.   I’m not sure what I expected his response to such good news to be, (grins and giggles, back flips) a smile, at least (and balloons and confetti), I mean – this is worth celebrating!  I made a point to clarify (and wipe the ‘duh’ expression from my features) – Yes, my pathology confirms that, as of now, I am cancer free!

**I think I should mention that this post has been a work-in-progress for over a week and rolling around in my head since I got this news (along with a few marbles I’ve managed to retain). Maybe you’re like my mom – wondering why I’m not doing a happy dance. If anything was ever blog-worthy – surely this news is; “I’m Cancer Free” would be snazzily punctuated on FB with those brilliant color backgrounds (which I rarely get to use because I’m too wordy). I’ve been processing. Because while this news is worth sharing, PTLD is a spectrum disorder that’s hard for me to fully wrap my head around. I don’t tweet (because of my aforementioned long-windedness) but if I did, I’d have to use my friend’s suggestion – hashtag its-good-news-but-its-complicated. Needless to say, the caveat that accompanies my good news has me feeling like my dance partner stomped on my toes.**

As I was preparing to leave the Oncology office my doctor left me with this one warning, “Do not, under any circumstances resume your immunosuppressive medications.”

Now, I’m normally a very agreeable sort of gal, rarely given to open confrontation or defiantly shirking the rules. But I do like to know my boundaries, my borderers, my wiggle room. And in this case, this caveat seemed pretty restrictive.

I fished for a loophole in his ultimatum and each time, he shut me down; explaining that to resume my previous course of immunosuppressive therapy or otherwise add-to or increase my level of immune suppression would likely reignite the currently inactive lymphoma cells.

So, the news, while not earth shaking, was like a little humidity for flat-ironed naturally curly har - it put a kink in my, otherwise, good day. 

And then, not 30 minutes later (no exaggeration) my Transplant Nephrologist called to congratulate me on my favorable cancer results…. and instruct me to resume taking the drug I’d discontinued as part of my PTLD treatment regimen. What?!?! Can you say ‘get on the same page’?

So here’s the long and short of it. My lymphoma diagnosis is specific to my transplant. It has responded well to the reduction in immunosuppressive therapy. But, as it’s a spectral disorder, I still have a presence of cells (lymphoid hyperplasia), that, at present, are inactive (PTL). What's complex is that, while the lessened immune suppression allowed my body to combat the cancer, it's allowed my immune system to gain a toe-hold. Like eager hunting dogs, long held in captivity, loosed for the first time, my immune system is alerting my body to the presence of a transplanted kidney. Hence the phone call and the conflicting instructions. My kidney is showing strain related to the PTLD treatment course and the goal, in increasing my immune suppression, is to try to avoid rejection.

I have this picture in my head. In it – I’m walking a tight rope, but it’s my elephant doppelganger, wearing a tutu, carrying a pretty parasol. Life with PTLD t's a balancing act. And until lately, I had confidence, that if I listed too far to one side, my tutu covered tush would have a safety net to catch me. But no longer, my safety net’s been pulled out from under me.

What’s my safety net, you ask? I experienced 10 blessed years with my previous transplant. But interspersed throughout those years I had at 3 memorable episodes of rejection; each of which were effectively treated with massive doses of steroids and immunosuppressants. My safety net – an arsenal of medications and treatment options to hold on to the precious gift of life-giving spare parts. At my last Nephrology appointment, my specialist explained to me that there’s little recourse for rejection with PTLD. The same rapid influx of meds, typically used to suppress my body’s immune system defenses and reverse rejection, would, with near certainty, trigger full blown lymphoma. Hastag good-and-complicated

As I’m writing this, I’m headed to the hospital for damage control. A kidney biopsy, later today, will give doctors a better idea of what treatment course is feasible.

If I’m honest – facing the risk of losing my kidney scares me. Probably because the long journey to this miracle kidney is still fresh in my mind. I like the sense of security that safety net provided. And yet, while I confess moments of fear and discouragement God has been so faithful to remind me of His promises. Truly – who needs a safety net when we have the promises in Isaiah 41:10:

 ‘Fear not for I am with you. Be not dismayed for I am your God. I will strengthen you, and help you. I will uphold you with my righteous right hand.’

Fear – check. Dismayed – yep. No safety net? No problem – God promises to hold me in His hand! Nothing is too harrowing or impossible in Gods strength; not even, a tight-rope walking complexity!

Without knowing it, I’ve been placing my trust in false security. I don’t like this hiccup, but I am thankful for the reminder of who holds my future and the opportunity to refocus and give God my full trust. hastag its-good-its-complicated-GODS-GOT-THIS

‘Trust in the Lord with all your heart and lean no on your own understanding. In all your ways acknowledge Him, and He will make your paths straight.’ Proverbs 3:5-6

‘And my God will meet all your needs according to the riches of his glory in Christ Jesus.’ Philippians 4:18

I would greatly appreciate your prayers – for healing, peace and wisdom. That no matter the outcome, II won’t lose sight of God’s faithfulness, that I’ll be a blessing to those around me and that God will be glorified through every circumstance! And… on a selfish note, that I’ll be out before I run out of clean undies – kidding, not kidding. ;P  Let’s just say – I have enough to get me through mid-week, I’m praying I’ll be home before I have to creative. But hey- even that’s not too complicated for Christ. No matter the circumstances, He’s not caught unaware, He’s not sleeping on the job and He cares about the big and little things that cause me pause. He’s the hand that holds me up and guides me along the tightrope!

‘Do you not know? Have you not heard? The Lord is the everlasting God,  the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
He gives strength to the weary and increases the power of the weak.’ Isaiah 40:28-29

Seeing Pink: Beauty and Hope on the Heels of Storm Clouds

At present, I’m laying here sucking Jello from its pre-packaged cup. Why, you ask am I still single? Two reasons:

1.    I’m nowhere near a spoon

2.     I’m off solids in preparation for a procedure tomorrow – which ‘obviously’ explains both, my snack choice and my lack of decorum (obviously I’m far too weak to trek down the hall in search of a spoon).

But honestly, I’m hungry, bordering on hangry and just minutes from whine-gry (this may be a Vanessa-original - a word combo based on hunger induced whininess – which in all fairness could also be referred to as Hiney, but really folks – I’m so much more tasteful than that). ;P Is Jello the snack that smiles back? Because I think I saw it chortle when I passed the real food to suck down its slimy contents like a greased pig on a waterslide. Ooh bacon!;)

I’ve been asked by several friends and family how I’m doing lately and I’ve been rather lax about blogging or correspondence. Maybe today’s not the best day to ask me, as the neighbors begin to launch noise complaints due to my stomach rumbling and my cat thinks my stomach’s growling is a personal affront.

But seriously, I’m good,  I’m tired and I’m good and tired. And beyond that I’m incredibly blessed! I’m trying to remind myself to savor each moment, take every opportunity to be purposeful and be a good sport as I fund a handful of specialists’ summer vacations. ;D

This week I’m inundated with doctor visits, tests and procedures every day except Friday, but in the two weeks prior I’ve been overwhelmed (in the best sense of the word) with the blessing of savoring moments and the people that made them memorable. I’m unable to forget my PTLD diagnosis with my perennial visits to medical professionals, but without those perpetual reminders I’d be apt to forget. Not today – but most days. Pardon me if this sounds ridiculous, but I’m glad for the reminder. I’m glad because it keeps me mindful that life is precious –it’s a gift from God and it’s meant to be lived actively – not passively. I want to live in the fullness of the purpose God has for my life – quirks and all.  And, if I’m honest, it’s easy to get lazy and let life pass me by.

God continues to remind me of His faithful character. In fact, today it felt as though He provided extra measures to reinforce the hope I have in Him through my morning devotions and in the song selections coming from the car radio (check out ‘Still’ by Hillary Scott).

‘Let us hold unswervingly to the hope we profess, for He who promised is faithful.’ Hebrews 10:23

I love how God paints word pictures – He evokes tangible emotion through our senses and provides ample opportunities for us to be assured of His faithfulness. Just look at His creation – the critters roaming this world, the watercolor daybreaks and the dark velvet expanse of night sky shimmering with stars. As a child I listened to my ‘Creek Bank Kids’ cassette tape (yes I am that old) enough that I still catch myself humming snippets of songs. Today these lyrics came to mind.

This world is like a coloring book His beauty’s everywhere I look                                                                    Every color that I see reminds me of His love for me                                                                                              God paints the world with love, that’s how I know He lives                                                                                  He fills the earth with colors and in that way He gives                                                                                                 Such happiness oh how we’re blessed to have this picture of                                                                                         A wonderful God Who cares so much that He paints the world with love

Tangible reminders make me smile. I was six when my grandpa died, but despite so many years removed from his company, I’m only one banana shake away from the most vibrant memories of him and his homemade ice cream. Maybe that’s why God chose to represent His faithfulness in the form of a rainbow. Genesis 9:13-15 says:

‘I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. ¹⁴ Whenever I bring clouds over the earth and the rainbow appears in the clouds, ¹⁵ I will remember my covenant between me and you.’

Isn’t it poignant that our Heavenly Father chose to paint with a generous color palette to reflect His promise? Beauty and hope on the heels of storm clouds and despair.

Tomorrow I’ll have more biopsies to determine the effectiveness my medication changes have had. To see if my immune system has found a toe-hold to fight the lymphoma cells. I’m preparing for that in two ways: One - the aforementioned diet (spoons optional, no chewing necessary) and two -  reminding myself of God’s promise of faithfulness.

Aww… that sounds so pious doesn’t it? Serene even. Well, not today.

Forgive the limited view of candy cotton color -

I suffer from selfie-insufficiency

Today I chose to boldly go where I've never gone before and I broadened my hair color horizons; taking my cue from God’s plentiful color palette with a pop of color that even I can see! And I love it (perhaps because I'm hungry, but the shades of purple and magenta make me think of cotton candy)! Two weeks ago I anticipated having no hair. Maybe that’s still in my future, Lord willing, maybe it’s not. But regardless, I’m celebrating God’s faithfulness in a little less orthodox, far more flamboyant fashion.

Now, when storm clouds roll in I need only look in the mirror to remember my God is faithful, my God is good – and that truth doesn’t change - no matter the weather!

‘Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.’ Lamentations 3:21-23

Steady On: Fast and Furious vs Slow and Stubborn

I had this conversation with a friend last night pertaining to waiting. I flippantly replied, ‘yeah, with all my experience waiting you’d think I’d be an expert. I must be a slow learner.’ The friend’s reply? ‘Oh no Vanessa! You have it all together – slow isn’t an accurate descriptor for you at all.’ Can you believe how well she knows me? Wait, sorry…. I had my feel-good filter on. Reality check – here’s actually how well this friend know me.

Me: ‘…with all my experience…blah, blah, blah…. I must be a slow learn.”

Friend: ‘Yeah. Or stubborn.’

Slow or stubborn. I’m not sure which moniker is more attractive, but regardless, I’ve been presented with an opportunity to once again wait (and maybe disprove these descriptors).

I don’t receive too many verbal threats – Oh, I’ve dealt with a few school-yard bullies in my day, but usually they did more pinching and shoving than talking – but they did make an impression (that munchkin-shaped dent in locker 214…) Overall, I’m pretty adept at ducking conflict. But there is one verbal threat in particular that leaves me shaking in my shoes. I was teasing a friend earlier this month when they doubled down and hurled the following verbal assault my way – “I’m going to ask God to give you….PATIENCE.”

*Full body quiver* Oh heavens to Betsey and Lord have mercy – what did I ever do to you?! Think I’m overreacting? I think not. But just in case, I’ll pray you’ll have patience with my dramatics.

I last prayed for patience in 2011. I’m certain of the year, because I had a full on melt-down that only a toddler deprived of their heart’s desire can rival. I remember feeling quite certain that God was highly overestimating my ability to rise to the challenge. I’ve learned my lesson… Now - I’m not claiming to have a firm grasp on this particular virtue, but I don’t want to be greedy. ;P

Amazon Prime 2-day shipping - *whine* why must it take so long – that’s FORRRRRREVVVVVVER! *pout, stomp sigh*….*Click - Expedited shipping*

Where, oh, where am I going with this whiney prelude? Good question.

Without praying for it, God is giving me, yet another opportunity to display patience. I say display, because He doesn’t just hand out the patience of Job (at least not in my experience). Instead He allows us opportunities and life experiences in which to exhibit such virtues. I imagine there was some character molding and patience gathering in the time between the first and last chapter in Job. What’s that saying? Experience is the best teacher? Truth. *Sigh*

I met with my Nephrologist and Oncologist within the last week to review my scans and biopsies. Overall, they were encouraging and the visits were positive. My PET scan and bone marrow biopsies were negative – indicating no spread of the PTLD from it’s point of origin. THANK YOU JESUS! What a remarkable answer to prayer and gift from God! With the lymphoma cells localized my doctors have recommended conservative treatment measures at this point. With alterations in my medication regimen and level of immune suppression the specialists hope to delay or avoid chemo altogether. I’ll maintain this treatment regimen with frequent lab checks and retest in 4-6 weeks to see if there’s been any change in the PTLD site. Further treatment will depend on those results – more waiting or more targeted treatment.

All-in-all this is good news. Tremendous news really – I can revel in hairy legs (further evidence to my single status?! What?;P) and chemo free days for the present. And yet, while I rejoice in the gift of good news and a block of doctor-free days on my calendar, I feel a let-down of sorts. This let-down has everything to do with the frustration of more questions. One of my specialists told me in no uncertain terms that finding this lymphoma was a ‘fluke’, because all of the symptoms and pain I’ve been experiencing are unrelated to the PTLD. Say what? This means that while I have some answers, I also have more fact-finding in my future. It also means that I must, once again, wait. Wait – that’s a terrible four-letter word isn’t it?

A friend of mine hit straight to the heart of my frustration. ‘You’d rather be doing something.’ Ah, what is it with my friends knowing me so well? He read me like a book. I want to be rid of this diagnosis. I want to click on expedite and forgo the wait.

‘Be joyful in hope, patient in affliction, faithful in prayer.’ Romans 12:12

Joy is dandy – I’m a big fan of joy. Pretty stoked about hope and faithfulness is a quality I fully support. But there’s that pesky middle phrase… ‘[be] patient in affliction’? I’d be comfortable omitting the middle phrasing. And yet - *sigh* despite my slow and stubborn attributes I know the Lord’s timing is far better than my own. I want to run ahead, conquer and race away victorious (all without literally running, of course). But God is the ultimate exhibitor of patience – He doesn’t have to rush, because He sees the whole picture and is ALWAYS right on time.

Reminds me of this time when I was little. We had this go-cart on the farm that was missing an engine (or is that a motor…. It was missing it’s get-up and go). In order to drive it beyond its neutral positioning Dad would hook it behind the 3-wheeler and give us an amazing thrill ride! That summer day we had friends over. Dad was giving each of us kids rides, facilitating our inner-speedster, when the oldest of our bunch took his spot behind the wheel. Wow! He had swagger – no doubt he had it all figured out. As Dad headed towards the 3-wheeler he hollered back his reminder to have fun, but under no circumstances was he to try to pass Dad’s lead vehicle. It’s not too hard to guess what happened. After careening around the farm yard for a time, our suave speedster grew tired of following and during a fast turn he cranked his wheel to slingshot around the lead vehicle. He caught air, gained momentum and then the lead rope caught the tire – his visions of grandeur and disregard for the urgings to not race ahead of my father fast became an impressive pebble collection with a bum full of road rash.

I ached for this kid’s burned behind, but I also wondered at his foolish disregard of my Dad’s instruction. Ah, me. So often I am this eager beaver and speed-racer. Throwing caution and promptings to ‘wait’ to the wind so that I might do what I think is best. It’s momentarily satisfying, but the repercussions can be as long-lasting and painful as a debris-encrusted derriere.

I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; He set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the Lord and put their trust in Him.’ Psalm 40:1-3

Tomorrow’s Easter – no matter what seems big or significant in my life right now, my struggles pale in com* parison to the act of sacrificial love Christ showed each of us by taking all our guilt and shame upon His shoulders. Withstanding every torture and disgrace in my place. A friend said it best – ‘If Christ would do all that for me, how can I do less than serve Him in what I’m going through.’

So, here I wait. Joyful in hope, fervent in prayer and yes, even endeavoring to be patient in affliction. I want to be purposeful in this calm and willing to be used no matter the circumstances.  I don’t want to be speedy and get ahead of my Father's wise plans for my life, nor do I want to be a slow learner. With Christ’s help, I hope to steady on.

‘Even youths grow tired and young men stumble and fall, but those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint.’ Isaiah 40:30-31

Reflections and Reflective Surfaces

This last week has been a blur. What a hectic 10 days it’s been. You know, I’m really a low maintenance low key kind of gal (the low maintenance ship sailed many diagnoses ago). I enjoy staying busy and being with family and friends, but I’m perfectly content to hibernate for days at a time with just a good book, my laptop, internet and ice cream. I’ve been itching to jot down my thoughts and the events of the past week and a half,  but between appointments and sedation it’s only now I’ve had the time and clarity to do so. Better late than never I guess.

This last week the reality of how my PTLD diagnosis could potentially alter my coming weeks and months became clearer. Almost like when you cut yourself. There’s that momentary numbness right after the incident and right before the pain. Like two summers ago I decided I was up to the task of cutting a watermelon – with the new cleaver-style knife I’d gotten through Groupon. I whacked away at that melon with the finesse of a 3-year old trimming their hair – when, with one slip, my giant knife met my itty-bitty finger. Or when my food processor blade bit me. The initial blow stung, but it wasn’t until I pulled my hand away and misted my face red that the sickening feeling in the pit of my stomach deepened, followed closely by the full impact of the injury and persistent pain. (The cleaver and I are still not on speaking terms, the food processor and I have since reconciled).

Processing this diagnosis and all the information that come with it feels like a similar progression, nowhere near as gruesome. I’ve had this blessed soul anesthesia – it’s allowed me to be clinical, reasonable (mostly – the carb-free day being an exception), and pragmatic. My Google search history is chalk-full of awesomeness – haircuts, unicorn hair color (much to my mom’s chagrin), wig research, lymphoma message boards, cancer articles, research abstracts, chemo and DPOA documents to name a few.

It’s my way of processing, my way to have my ducks in a row, plan, take control of what is a situation I have no control over. No – that’s wrong. I do have some control – in how I react to this new life adventure, how I choose to move forward with this diagnosis and treatment, how I choose to embrace the purpose God has for me and Whom I choose to trust. Oh, and whether or not to color my hair like an Easter egg ;P

I spent some time away early in the week with my mom for therapy – of the retail and laughter variety. Two days spent laughing and talking, shopping and eating.  I expected the time away to be a PTLD-free zone. No talk of lymphoma or treatment – only fun and frivolity. I was right… and I was wrong. It was fun, but lymphoma doesn’t take vacations and the topic was never far from my mind. Talks about lymphoma and treatment possibilities made their way into our conversations. It’s hard not to – and I’m glad it did, because it gave us a chance to explore the hypothetical, possible and probable in candid conversation in a safe space…. with the aid of cheesecake. ‘(Just a spoonful of sugar helps the medicine go down…. ‘)

Reality bit, err, hit¸ upon my return home with Wednesday’s bone marrow biopsy. I’d heard multiple accounts of how dreadful the procedure was – and I was looking forward to having it behind me (which is exactly where it was done). ;) I can think of other ways I’d prefer to spend my time, but really, it wasn’t as bad as I’d anticipated. The IV sticks were the worst part pre-procedurally. That and the early morning scavenger hunt they sent me on upon arrival.  They gave me a cup and asked me to fill it with some vague mention of a hallway, a wood floor and to my right. To be fair, it was early and I wasn’t caffeinated. I’m pretty resourceful –  but after wandering down two dark corridors and finding no water spigot I decided the hunt was too exhilarating to keep to myself and recruited help in finding that elusive room to the right with a wood floor (I never did find the water fountain, but somehow I filled my cup). But I digress – bottom line.  Praise the Lord for His peace and comfort and for anesthesia’s sedation - the procedure wasn’t as bad as I anticipated! I guess I should have been better prepared, the nurse I talked to told me I should expect to feel like I’d run into a sharp object with my hip. I’ve had years of practice bumping into things ;) It wasn’t so bad, I don’t have any powerful urges to make a repeat performance, but it’s been very tolerable. I’ve been rocking pants with elastic waistbands and a week later I’m still sitting a little more carefully and conscious of some derriere discomfort , but otherwise I’m no worse for wear.

What really stands out to me about that day was hearing my nurse’s take on my situation. While she fished for a viable IV site and I recounted my health history – apologizing for being a difficult stick her comment was ‘it’s understandable – you’re one sick young lady’. Strange. In a day of multiple IV sticks and bone marrow ‘core sampling’ that’s what really stung.

I spent Thursday afternoon hair shopping. Yep, hair shopping. Chemo seemed to be a real possibility based on the conversation with my oncologist two weeks ago and I wanted to be prepared. For anyone that knows me well or has ever met Gertie you’d expect a room full of wigs to be akin to a kid in a candy shop (or for that matter, me in a candy store). It was an impressive array of hair. No matter how I hyped it or the enthusiastic responses to the different do’s I tried I couldn’t shake the reality – I wasn’t picking a style for a new flamboyant character to introduce at church. That’s fun – the outlandish allows me to say and do things with the safety of a pseudonym. I mean, shucks! Gertie sees every man that’s upright and breathing as a potential dating possibility – she makes Farmer’s Only.com look likes child’s play. I on the other hand….  My doctor described me as being one of the ‘unlucky’ few to never have had EBV, better known as kissing disease – Need I say more?

After finding suitable hair and headwear I spent the car ride home comforting myself with the Brightside of proposed hair loss. This is what I’ve come up with so far:

1.       I love hats

2.       Big fan of scarves

3.       Everybody loves Mr/Mrs Potato Head and they rock their look sans hair

4.       I could save a bundle on waxing

5.       My eyebrows could reflect my mood or artistic flair any given day

6.       I could change my hair on a regular basis

7.       No more bedhead

8.       It would be cooler for Spring/Summer

9.       Save a bundle on hair products and hair styling time

AND finally….

10.   I can bring my legs out of hibernation – they’ll be beach ready at all times

I almost had myself convinced. But to be honest, it was the first time I really had to fight tears.  I may have waged a love/hate relationship with my curls for the last 29+ years (I rocked the cue ball look my first 3 years of life), but the possibility of losing it has given me a new appreciation for my hair.

Like one friend pointed out – hair loss related to chemo makes your illness evident to the world around you. It’s true – I’ve spent years trying to seem as normal as possible in regards to my vision. So much so, that when I was still able to work, some of my co-workers were unaware of my low vision – asking me to decipher Physician’s handwriting for them. It was a point of pride for me. As long as no one knows I’m ‘sick’ than I’m really not. Maybe that’s as naïve as thinking if I can’t see you, then you can’t see me. ;P There’s a certain vulnerability to displaying our weaknesses – It’s humbling.

Maybe that’s why I relate so very much to Paul when he writes in 2 Corinthians 12:9-10,

But He [Christ] said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. ¹⁰ That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. ‘

Maybe my diagnosis will be evident this summer, maybe it won’t. But I do know that God is writing the story of my life and I want my life to reflect the hand He has in it – Whether that includes bed head and bad hair days or silky smooth legs and a bald head (just one more reflective surface).

Holding on to my humor,

Vanessa ❤

Spring is coming: Splendor of the Storm

We’ve had a lot of rain lately – last week on my way to my PET scan I passed the river. It was high in its banks and flowing strong and steady. In some places, where the water rushed about a rock these raging swirls of water spun topsy-turvy. It was a sight to behold – beautiful, wild and yet somehow peaceful. I feel like my life is a little like that river. I feel like the rock – water raging and swelling about, distorting my equilibrium in those frantic whirlpools - Stormy seas. But there’s splendor amongst the soggy. Those roaring waters refresh, replenish and renew - they rid the river of stagnancy and the rocks of their rough edges.  My Savior is the anchor I cling to to keep from drowning. He is the river banks keeping me safe within His embrace. I don’t love the turmoil of a storm, but oh, how I love the new life that springs forth when the sun comes out. (Cue ‘The Sun Will Come Out Tomorrow’)

I absolutely love the song – In the Eye of the Storm by Ryan Stevenson. It has phrases that feel very timely and personal:

“In the eye of the storm, You remain in control
In the middle of the war, You guard my soul
You alone are the anchor, when my sails are torn
Your love surrounds me in the eye of the storm

When my hopes and dreams are far from me, and I'm runnin' out of faith
I see the future I picture slowly fade away
And when the tears of pain and heartache are falling down my face
I find my peace in Jesus' name.”

Maybe you’re in the midst of a stormy season – my story is unique to me, but struggles aren’t. Maybe you’ve emerged on the other side of the storm and you’re basking in the sun. Maybe you’re coasting on still waters or maybe, your stream’s run dry. Wherever you find yourself, may I encourage you to look to the giver of all good things – the Living Water and Strong Anchor. Christ Jesus is the only reason I have a semblance of sanity – I’ve heard people ‘marvel’ at my strength and maturity. That’s all Christ folks – left to my own devices – when the storm hits I’m bound to adopt a wet-cat way of thinking. Whiny self-pity, disheveled, angry and annoyed. Not a pretty picture!

Knowing Christ doesn’t take away the storms, but with Him as my anchor, I know I have HOPE! I have security in tumultuous times and I can trust that He will smooth my rough edges and use the hurricane season for my good, His glory and a remarkable Spring season to come! And if He would do that for me - a semi-reformed wet-cat. He'd do it for you!

With love & prayers that you might find rest in the loving embrace of Christ whatever season you're in! - Vanessa

You Have a Glow About You.... Isotope Radiance

This song, Hungry, seemed especially appropriate in my current condition – By the time you read this I will have been without sugar, carbs and caffeine for nearly 40 hours. The struggle is real folks.  I have this dear, wise, friend who sometimes shares his time tested wisdom with me. He once told me that a honey bun at the start of each day gives a person sparkle, if this is true, .I fear today I will be a little lackluster. I also have a dear roommate who is getting to know me well – she hid all the baked goods – which was smart because I haven’t been able to get her cinnamon rolls off my mind!

But seriously, the song is fitting for more reasons than my personal lusterless (hyper-dramatic) crisis.

The results I glean from today’s PET scan will set the course for my next treatment steps I take in this cancer journey. I’m nervous – staging my cancer makes it all the more real. Today’s tests have no effect on my health – but the results they produce shine a light on the degree of my illness and that’s difficult to deny.

As far as tests go, today’s was relatively easy – any time sweats are the dress code I’m your girl! My glowing personality got a boost from a little bit of isotope radiance (cue Radioactive), but this evening I feel like I’ve been to the cleaners – my body feels wrung out, and my brain feels water-logged.

I’ve been spending most nights online into the wee hours researching my illness, trying to find online message boards and support groups to get a handle on what I can expect and thinking on the decisions I need to make in the days to come – some decisions are easy. Ice cream or no ice cream – Hello? Really, never say no to ice cream! But others weigh a bit heavier – potential side effects, and long term effects of treatment…. It’s a long list – it’s not making me anxious, but the cumulative effect of the last week and the sum of my thoughts makes me weary.

Matthew 11:28 “Come to me, all you who are weary and burdened, and I will give you rest…’

Maybe that’s why the Lord brought this song to my mind today – I had some free time to think while I was in the scanner ;) These sweet words are like balm to my soul – The Lord is my strength and the source of my renewed energy – He is the source of my hope, because He is HOPE!

‘Hungry I come to you for I know you satisfy. I am empty, but I know your love does not run dry. I am empty, but I know your love does not run dry.

So I wait for you, so I wait for you… I’m falling on my knees offering all of me. Jesus youre all this heart is living for.

Broken I run to you for your arms are open wide. I am weary but I know your touch restores my life.’

So tonight as I fight heavy eyelids and a foggy noggin, I’m grateful that though I have thoughts spinning in my gourd I also have a reliable confidant to take those concerns to. Not to mention the blessing of some wise counsel in the form of family and friends!

The picture is a screen shot my dad texted me today – it’s from Psalm 119. I just love it when God uses others to encourage me in such tangible and beautiful ways. I also found a cheery and gorgeous touch of spring on my table from a sweet friend tonight. It’s not necessarily the ‘stuff’ about it, but the blessing behind the sentiment lightens my heart and gives me further reason to praise God for all the gifts He places in my life!

Odd huh? Too saccharine sweet? Sound a little too Pollyanna for you? Don’t worry, I suspect if you wait long enough you’ll be privy to my public rants and pity fests. I’m not perfect; nowhere close; but the reason for my gladness is and He is good to show me the glitter in the midst of the grime. (Glitter – ooh, honey buns!) ;)  Speaking of, some of you have inquired as to my dietary status. I relieved to report that there was only one hangry episode, bordering on minor meltdown. Thank you for your prayers for my Mom!J I’m no longer banned from my beautiful carbs! I’m happy to report we were reunited late this afternoon! Bless Mom – she knows me so well, I had a French baguette half-way inhaled before she’d handed me the take-out bag. She showed good judgement by offering a heartfelt, but condensed prayer to bless my food.

I’m thankful for the lifted carb ban and bread, but I’m so glad for the Bread of Life – the God who sustains, satisfies and provides – in the midst of seasons of calm and seasons of trial!

May your day contain luster (God's provision and the yummy carb kind).

With 'glowing' regard ;)

Ness

Is Weengry a Word? 1st Appointment with Oncologist

I'm feeling eager to get some answers – I hate the not knowing, and googling isn't and especially coming past time! And well ready to have some answers I'm anxious about what kind of worms that will unleash!
I think my cousin said it best when he had a face to face encounter with the snake " I wouldn't feel so inclined to hate all snakes – those sneaky critters, if God had put a bell around their necks. " I think the same could be said about the unknown… And cancer.
I don't know what the day holds, but I know who holds me!
Fear not for I am with you, be not dismayed for I am your God, I will strengthen you and uphold you in my righteous right hand. Isaiah 41:10

It’s late, I had intentions to write down my thoughts form the day much sonner, but instead, I took ate ice cream and took a nap – I know my priorities are right on track right?! ;)

As this day comes to an end I’m tired and suffering from a bit of SBS – soggy brain syndrome (yeah my gourd is a little mushy). But today was one I won’t soon forget and I hope you won’t mind if I share a few thoughts I am struck by, some irony and answered prayers.

Today my cancer was confirmed…. Hmmm, wait right there.

• Thought #1: ‘My cancer’ – Less than a week into this diagnosis and I’m already staking claim. Either I’m super adult taking ownership (or is that responsibility) or my only child syndrome is more far-reaching than I realized. ;P Yes, I have cancer – but while I may call it mine, I don’t plan to play accommodating host. I’ll be glad to relinquish claim if or when the Lord sees fit.

Nonetheless, lymphoma is my new reality. I’m in uncharted waters, outside the shores of my relative comfort zones (comparatively) - kidney transplant and vision loss. Today realization of what this diagnosis means and how it affects my foreseeable future became a little less murky. Until today I’ve been able to have a certain measure of disconnect; dealing in mere hypotheticals. Disconnect has its place, but I’d rather know. Call it a control thing, but I don’t like to dwell in the ‘what ifs’, but rather, what is. Today, I got a step closer and had an answer to prayer along the way – God showed up and He showed Himself faithful!

My first impression of the clinic raised my anxiety a bit – I know, don’t judge a book by its cover. But – were this clinic a book it would be a Tolstoy novel – intimidating. The atmosphere was disorienting and the décor sterile.

• Thought #2: Is it weird that I expected a cancer clinic to be cheery?

• Thought #3: I asked for prayers for clarity this week. That can encompass many ongoing issues, but one of great concern to me was whether I would be able to clearly understand the oncology/hematology specialist and the information he was presenting. PTL…Within minutes of meeting my oncologist (yeah, I’ll claim him) my concerns were put to rest.

He was kind, personable and professional, took time to listen to my history and was willing to endure my great inquisition (a two-page list of questions). He was open and forthright and shared my pathology findings with me, providing clarifications when needed. I can’t truly express what a gift that seemingly simple answered request means to me. If God cares enough to eliminate language and understanding barriers, when that is just a small piece of this complex puzzle – how much more must He care about the big things and all the in-betweens!

Isaiah 40:26 ‘Lift up your eyes and look to the heavens: Who created all these?

He who brings out the starry host one by one and calls forth each of them by name.

Because of his great power and mighty strength, not one of them is missing.

Doctor T gave me a better understanding of my disease process, prognosis and causations. The specific Post Transplant Lymphoproliferative Disorder (PTLD) I have is Diffuse Large B cell Lymphoma – triggered by Epstein Bar Virus (EBV). The same virus that causes Mono, which is commonly known as Kissing disease…. The irony of which, is not lost on me.

• Thought #4: Perhaps it ranks me among the most peculiar patients on record, but sitting there, faced with the reality of my cancer diagnosis all I wanted to do was… GIGGLE! ‘Never Been Kissed’ wasn’t just a 90’s chick flick, it could be the title of my autobiography. KISSING disease was the culprit of my cancer – Talk about adding insult to injury… I couldn’t make this stuff up! But I digress.

• Thought #5: Did I mention my thoughts are a bit…… SQUIRREL! ;)

All, in all, I came away from my 1st appointment knowing more than when I arrived. Over the next two weeks I’ll have tests to determine the nature of my disease and tailor a specific treatment plan. I’ll have a PET scan to determine the lymphoma staging and a bone marrow biopsy to rule out spread to the marrow. Chemo will follow.

Along with outlining the next few weeks, the oncologist shared some of the statistics that surround this disease. However, I’m hesitant to throw out specific percentages and odds for 4 reasons.

1. God’s power isn’t confined to a man-made box and he’s certainly not limited by statistics.

2. It’s all guessing until further testing is completed…. And even then – see point #1.

3. The last friend I shared my PTLD probability with suggested I visit Vegas with my ‘un-freaking-believable’ knack for hitting every unbelievable odd known to mankind. I’m still giggling – not to mention, I like the idea of a girl’s weekend. ;)

4. Numbers really aren’t my forte (my pre-calc tutor told me so) – if it requires counting higher than what my fingers can supply, forget about it!

But I will say that the oncologist was cautiously optimist, saying that more often than not - patients with PTLD experience complete remission!

I’ve been taken off one of my immunosuppressant meds completely and I have an idea of what the next two weeks will look like – labwork, tests and doctor’s visits. Educating myself further on this disease, nutritional support and resources.

• Fun Fact: Of all the concerns and risks that accompany this diagnosis, I suspect I’ll find weaning myself off sugar to be among my least favorite. Alas – I still haven’t found substantiated evidence for an ice cream diet protocol – I asked!

I’d continue to ask for your prayers – for wisdom for everyone involved, for clarity, peace, and for unwavering faith and commitment to reflecting Christ!

In the meantime, I plan to enjoy my days of ‘normalcy’, yet untouched by treatment and the side effects it brings with it. I think I’m holding up pretty good, thanks in large part to Christ. I know that He’s the responsible party for my sanity, because the lapses are all to my credit. Yesterday after skipping breakfast, due to nerves and spending the better part of the morning meeting with the oncologist, schedulers and phlebotomist I had worked up an appetite - I was hungry. Nope, that’s an understatement, I was Weengry. You know, irrationally weepy because of hunger and fatigue. What? Not familiar with that term (neither was my spell checker)? ;P I pointed out each eating establishment we passed heading away from the cancer center. But we were on a mission to get my smart phone fixed (I say we, but at that moment, I only had eyes for the 2nd Taco Bell we’d passed). Earlier this month I’d dropped my phone on the cement slab leading to the corals. Crap! Quite literally and Crack! My phone did a screen dive. *SIGH* *WHIMPER* *FOOT STOMP* Fortunately I had insurance, which unfortunately, required an accident report to be filled out online. *WHINE* *STOMP* *WHIMPER* At that point, a 10 minute survey submission felt like too much!

Why am I telling you this? Honestly, I don’t totally remember, but at the time I started writing it 10 minutes ago it seemed important.

But really, I guess I say all that to preface the following.

I am beyond humbled and gratified by your outpouring of encouragement, earnest love, prayers and support! I so wish I could hug each one of you and update you personally.

I spent the better part of Sunday and yesterday on correspondence – sharing my news, responding to texts, emails and calls and sending out updates. As time goes on and my treatment progresses I’m suspect there’ll be days when just brushing my hair will feel as overwhelming as that 10 minute survey. I’ll do my best. I welcome your correspondence, comments, texts and questions. And I will endeavor to keep you all posted through my blog and FB. Beyond that, please don’t feel slighted if I’m silent or slow to respond – because I am so very thankful for you and praise God for the gift of encouragement and prayer He provides me through you!

I’ll leave you with another song link – a friend shared it with me this week and it blessed my heart – I hope it does the same for you!

With hope (always hope),

Vanessa Loewen

P.S. For all my friends that have walked the journey of cancer, chemo, ice cream withdrawal etc. I would welcome your tips, hints, resource referrals! Thanks dear ones!